Please I need your help

Hi James. I was diagnosed in August 2006. I was admitted to hospital very ill and was thought to have an infection somewhere in my digestive system (I had a sub-total colectomy in the April). However, it very soon emerged that I was diabetic, caused by long term, high dosage of steroids to try to bring ulcerative colitis under control and into remission. However, the steroids didn't work but managed to damage my pancreas to the point where I no longer produce insulin myself. Until they could be sure I wasn't producing any insulin I was put on tablets (I'm sorry, I don't remember which). Within 36 hours it was clear that wouldn't work so I was moved to Novamix insulin, twice a day.

In the January following diagnosis I developed a condition called Pyoderma Gangrenosum. I was put back on steroids and Cyclosporin (an immuno-suppressant). As is common with steroid use, my blood sugars rocketed and despite trying extremely hard to be careful what I ate and how much insulin I took, and consultation between the surgeon, gastroenterologist, dermatologist and diabetic specialist nurse, it was decided to change my insulin regime to Novorapid 3 times a day with meals and Lantus at night. This proved to be much better at controlling my sugar levels. I have stayed on this regime even though the steroids and immuno-suppressants stopped in February last year (because of a detrimental effect on my liver/kidneys - another story!). Because I no longer have a large bowel and therefore am short of quite a length of digestive tract, food speeds through my system at an alarming rate so to try and slow progression of food in an effort to extract a few more vitamins and minerals along the way, I have to consume a fair amount of potatoes, rice, pasta etc. - more than a diabetic should. However, my average readings are at present 5.5 weekly, 5.7 fortnightly and 5.8 monthly which, although not ideal, are fantastic to what they were this time 12 months ago. All the consultants who care for me are really pleased with these readings. I have to go back into hospital soon (due to go in on 14th April, that's if they don't cancel again) and I know that will throw a spanner in the works for a few weeks. If you have any questions, please feel free to ask.

Jackie

James, I'm happy with the medication I've been prescribed as it seems to suit me perfectly. After diagnosis I was admitted to hospital the same day and initially given insulin injections until BG levels came down to safe levels. The consultant then asked me if I would prefer to continue with insulin or try oral medications instead. I opted for tablets and within a week, BG levels were consistently between 4 and 7, down from almost 20.

Since that time, a major change in diet and silly amounts of exercise led to significant weight loss (18 stone to under 14 stone in less than 6 months), and allowed me to drop medication from 120 mg of gliclazide to 80 mg. A few years down the line and I'm still getting good results. How long this will last I don't know, but both my father and grandfather managed with tablets for well over twenty before being forced to switch to insulin.

Some here feel that gliclazide and similar drugs cause the remaining beta cells in the pancreas to "burn out", which may or may not be the case. I'm satisfied to avoid the needles for as long as I possibly can.

Hope this helps.

Hi James

I was dx in Sept last year, Type 1, via hospital inpatient stay following a trip to gp that morning

I was put on a sliding scale and then 2x daily injections of a premixed insulin which is more akin to type 2 diabetes or young people (in fact Novo Nordisk market it as a good insulin for type 2's).

I wasnt told anything about insulin,the profiles of it or the different regimes. In essence I was given no choice. On the mix I do ok, A1c was 5.1 % but its about as flexible as a steel rod in concrete in that I need to eat at regular times, or risk hypo and need to inject 30 mins before eat or risk higher bg. I also cant dose adjust so If I want to eat a bit more or less than usual on one day then its useless. You want to try managing a hangover on premixed insulin! :wink:

I just get on with it because they wont change me to any other regime due to the doses I am on being too small (likely honeymoon, plus managed carboyhdrate diet) but am quite resentful that not only did I mention it to them (wasnt told about any other regimes) but that when my honeymoon period ends, which will be a time of emotional and physical stress for me, that I will then have to contend with a new insulin regime 7+ months into my diagnosis.

L

Hey James

Happy to contribute, no privacy issues! Potted medical history follows:

You'll see from my sig I was diagnosed in 1982 as T1, short stay in hospital, followed by steep learning curve but helped by the fact my Dad was a GP. Initially on 2 injections a day of long and short acting insulin, learned all about "exchanges" and was always fairly active. I cannot remember for the life of me what the insulins were called, you may find them in the science museum. Changed to a Novopen in 1986 and started filling it with Actrapid u100 injected before each meal, and used Ultratard/Insulatard at night. Started smoking full-time, but always maintained "healthy" diet.

Various pen and insulin upgrades (and many years) later I moved onto Humalog for meals and Lantus at night, I think this happened in around 1997? Did not like Humalog at all, had some horrific hypos and reverted to A.N.Other insulin for a while, my memory is not what it used to be... but I was still using the exchange system for counting carbs, which I had always done (still count carbs religiously, even now, kind of a pre-requisite for pump therapy).

Kicked smoking into touch in 2004, good riddance to bad rubbish (he says now...). My real revelation was in 2005 when I moved onto pump therapy after further disabling and indeterminable hypos, and learned about GI & foods for the first time, yes that's right I had been using Humalog and eating rice and pasta for quite a long time, hence the hypos from '97 onwards. If you don't understand that irony, read up about GI. Still using Actrapid in my first pump which was an Accu-chek Spirit, then moved to my current setup in 2008.

Other points to note: best HbA1C was 5.2, worst has been 9.5. Complications started early for me, around 1993 with pins & needles in my feet. I was referred to an opthalmologist in 1999, laser started same year. Also first signs of hypo unawareness. Hypertension diagnosed 2002, cocktail of medication ever since. Osteomyelitis in 2007 in little toe, definite wake-up call, big car crash later that year (hypo), surrendered my licence immediately.

All my insulin changes have been at the behest of my medical team, apart from my insistence on dumping the Humalog which I hated. Other advice I've always regarded as a starting point to work from, preferring to sort myself out because if you learn it yourself you're unlike to forget. But I have a great support network too, and I am happy to include this forum in that assessment. My attitude to life was always "die young, stay pretty" (great Blondie track in case you were wondering), but then realisation dawns when you're told you'll be blind within 5 years, despite having relatively good blood numbers.

Hope this helps. If you want any further specifics, probably best to PM me. All the best, Jo

Our GP practice is very proactive with thyroid, which is excellent (and uncommon) however this can not be said for their approach to Type 2. I was told I would not be eligible for medication until my A1c reached 8 (this may now have been reduced to 7 or 6.5) and when I enquired about metformin (my problem appears to be insulin resistance which is familial) I was told this was not available as I was not overweight.I was also refused test strips.

Basically their approach is to give you the standard High Carb Low Fat diet then wait until you have disintegrated before starting treatment. Which sucks, but is dictated from On High. There is a particularly narcissistic Endo in Norwich who refuses to permit blood testing, I spot his influence.

I also suspect the treatment for Type 1s is far superior, but in common with many areas they are not keen on basal/bolus and prefer the dreaded NPH to Lantus or Levemir if they can't get away with Mixturd.

Basically, saving pennies now in order to spend pounds later.

From another thread:

IanD said:

Spike said:

I only asked for a bit of advice! What's all the palaver about?
All I asked was whether the advice I'd been given was reasonable or not. If I've been encouraged to reduce the fat in my diet and eat more starchy carbs instead, a second opinion shouldn't be too much to ask for? It doesn't seem to work for me, but does it work for any of you? If it doesn't work, then I have to do something contrary to the medical advice in order to improve my health. I can appreciate we ultimately have to make our own decisions here, but how does the dieticians advice help me to do that? If I have to do it differently, will it have to be without the support or endorsement of my medics? To be left to my own devices is one thing, but to contradict the official line completely is something else entirely?

Spike

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That is precisely the problem, Spike. We are given advice by the health profs along with the info that diabetes is progressive, so that if we follow their advice, complications will follow. We are also told by HPs that getting advice from the www is dangerous, & that what may work for one is not suitable for all - only change your treatment if advised by the HPs who will only give you the party line advice anyway.

Does the standard dietary advice amount to medical negligence? Equivalent to prescribing a drug that aggravates the condition or causes side effects that are then attributed to the disease rather than the wrong treatment.

Should we bring a "class action" against NHS & DUK for the perverse diet they advise? My leaflet was hot off the press, & it will be given out to many who will follow the diet until the expected complications set in (like I did.) Some will continue to get worse, unless they find a website like this & change their diet.

My problems substantially cleared after 3 months of reduced carb. I had crippling leg pain a year ago.

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The leaflet in question is: http://www.patient.co.uk/showdoc/23068721/

I was diagnosed 32 years ago aged 4. I seem to have been on different insulins since then, which seem to match the "fashion" at the time. I am now on levimir/novorapid...like most T1s at the clinic I attend. I have no complaints about it. each change has been for the better, although the number of injections has increased from 1 a day to 5 a day.
Good for you finding out. I think the worst thing professioanls can do is assume that we are all the same. I do seem to be, "usual" but I know of other who prefer the animal insulins and can be made to feel a bit like freaks!
My latest insulin change was to split does levimir, and, for the first time it was explained why, what the insulin was supposed to do etc. In the past, particulalry when I was a child it was certainly dr knows best...don't bother explaining it to the patient. They didn't even explain it to my parents. This stopped when I ranted at the Dr a bit, explaining that at the time I was studing for a PhD, so he could may be give me a bit of the science behind it.

Hi James
I was diagnosed with type 1 nearly 36 years ago and have used various types of insulin, and latterly analogues. All changes except one have been the idea of my professional carers, always with the promise that the new one's the best thing since sliced bread. Sometimes with little chance to ask questions or say No Thanks. One insulin simply didn't seem to work on me, despite drastic dose increases. Another time, when the nurse said 'once you go onto this you can't change back' but couldn't tell me why, I wasn't keen, but 'No' wasn't acceptable. That particular insulin (an early so-called 'human' one circa 1986, can't remember the name) caused me major health and social problems, which were dismissed as impossible by the nurses, who also blocked access to the consultant when I was having problems. The change back to porcine insulin came in desperation, via my GP who spoke to the consultant personally. It saved my health, sanity and marriage.

Hence I was cautious about trying Glargine/Humalog, only agreed on the basis I could change back at the first sign of trouble. (At a different hospital from the one with the obstructive nurses.) Glargine helped a bit but it was a choice between being hypo in my sleep or high/erratic bs all day.

The big change came 2 years ago, when I was wrongly told I needed to be on Levemir to do the DAFNE course. Happily, Levemir suits me better than anything I've used before. So for all the previous efforts, the best change came accidentally.

The professionals must take our views into account, and admit if they don't know the answer (and find out for us), not pressure us into changing because it's the latest thing/easier for them/cheaper/meets some target. They're not the ones living with the consequences, which could include loss of quality of life/job/driving licence/marriage if a treatment doesn't suit.

Hi James
I was diagnoised two weeks ago i think, I have type 2, my new gp pushed through blood tests. i must admit that there is a lack of advice from gp's and nurses about the condition!
I am scared i must admit that I knew the warning signs, as my mum is a type 1 diabettic on insulin shots daily! She is 75 now! She became insulin dependant when she fell pregnant with me!
I am now 33 years old! I must admit that if you listen to alot of gp's they will tell you to eat alot of carbs!
I have noticed that taking carbs out of my diet except when i make a mistake then this has been helpful!
I think it would help a alot of type 2's if they were to be given a monitor and have test strips on prescription! I am lucky there as my gp is helping me and giving me strips!
As she knows that i want to take control of the condition! i know that i have not had the condition long! But i think that it is fair to say that if type 2 were given regular test strips then this would help!
How else would we work out what food is good or bad for us! what foods to avoid or to use!
yes there are routine blood tests that the doctor's do but this only gives a average! Does not give a clear view of what is happening day to day!
I have other health conditions to take into play here!
But one of the side effects already is that i am getting numbness in my right foot! My doctor says as far as she is aware this could be very mush a side effect of the diabetes!
I am making a chart of my blood tests! do different times of day or when i feel high or low! I think alot of people would benefit from having a meter and sticks as then they would feel that they had some sort of control!

hya james,
basically i was diagnosed with type 1 in hospital 5 yrs ago, i was given novomix 30 and told to take twice a day etc, i wasnt having very good readings and my hba1c was around 8, then my diabetic nurse said they were getting a new insulin for the 1st time and did i want to go on it, it was lantus, i was now on lantus and metformin, as i didnt know any other diabetics i struggled to manage as i was having highs on a daily basis, the drs said that was ok but i wasnt happy,
i then joined this forum and was very unhappy as i was having highs and lows daily, i was feeling rotten so i cut down on carbs and basically hardly ate to stop the highs, the nice folks on ere told me about basal bolus and i asked my diabetes dr who said i was fine as i was, hba 7.8, i wasnt happy so pushed and pushed and my dietician and diabetic nurse said seeing as id learnt about carb counting myself they would back me, the gp still thought it was a bad idea but after having rubbish readings ,now after only a few mnths my hba1c is 5.9 and apart from many other health probs im finally happy with my treatment 4 diabetes , altho as already said i had to more or less beg to go basal bolus, it seems here that u go onto what meds dr says as he knows best...but this isnt always true